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4.19.07 – 4.19.12 : 5 Years of Marley

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.:*Happy Birthday, Marley!*:.

(mommy’s working on a slide show, your cake, your party, and all that goes with it…. so this will have to do for now)

29… for the first time.

It’s 4:36am and I’m blogging….

Why would anyone blog at 4:36am? Why would a mommy blog at 4:36am?

Because yesterday this mommy turned 29… for the first time. (Next year I plan to turn “29 again”, and I personally think it’s a travesty that I didn’t ‘stop’ at 25… except for the fact that it would mean no Killian… so, maybe I could have ‘stopped’ at 27.. that would have been ok, too!)

What does my birthday have to do with blogging (at 4am)?

Well… I’m ashamed to say that after a delicious dinner with Ben (and my yummy splurge on 3 desserts), I came home and went into a sugar coma  fell asleep.

I was completely out before 10pm…. in fact… it was probably closer to 9pm.

That wouldn’t matter on a normal night. Last night, however, I was supposed to make an announcement.

I begged and ‘shared’ all day yesterday to draw people to the blog and facebook page. For my birthday, I wanted to top my ‘busiest day’ here on the blog. It would be a bonus to break 50 fans on the facebook page, but that was secondary. So I linked and shared and asked you all to do the same to see if we could top the 47 visitors that I had on opening day here.

And… as usual… y’all totally rocked it.

My friends and family are so amazing!

You all took Marley’s story and shared it, asking those on your lists to please come read the blog.

During the afternoon I watched as the stat counter climbed.

25…..37….41….46….48!….51….68….

Seeing that we not only beat the previous 47 visitors, but that we had almost passed it by 50%, I put out a challenge–

“Can you drag 26 more people towww.marleystop.WordPress.com before 11:59pm?
Can you get one more ‘Like’ on the Facebook page?”

The fan page was sitting at 49 and had been all day… and if we added 26 to the current number, we would hit 94 and double the previous record of 47!

I checked and rechecked the stats… and then I fell asleep.

When I woke up at 3:30, I had to see the numbers.

Bleary eyed, I turned on the laptop….

“93 views on your busiest day, February 10, 2012”

Y’all are amazing.
(and maybe if I wasn’t asleep on the job, I could have dragged one more person over, lol!)

In fact, since my last post went live, we’ve had 144 visitors!
A quick look at the fan page– “51 like this”.

🙂

So… thank you… from the bottom of my heart! You made my day wonderful, you got the word out, and 51 of you are holding me accountable, which hopefully means more blogging/ more often!

And… for the announcement…

Like I said on the fan page, it’s probably a much bigger deal for me than it is for you guys– however, it will make it easier for you to visit and refer friends to the blog.

My birthday present to myself was officially registering www.marleystop.com as my own, which means no more ‘wordpress’ in the URL!

Easier to remember, less to type, and much more ‘spread the word’ friendly!

Again– thank you all SO much for the love and support that you’ve given me! The birthday wishes on my facebook wall, the phone calls, messages, and offers of love/prayer/help/thoughts… it keeps me sane (well, as sane as I can be), and I love you for that!

(And now.. back to sleep!)
(speaking of which– check out who voluntarily took a nap today! The child who doesn’t sleep alone…. put herself down for a nap in her new bed…. in her room… that she no longer shares….)

It’s not always an uphill battle…

First of all– I apologize for the long time between posts. Holidays are hectic even without everything we have going on and it’s been way too easy to put off this post for way too many days/weeks.

I’ve honestly not wanted to write lately because things have gotten more difficult and I was so afraid of coming off negative, etc.

After a month of tomorrows… and the realization that things aren’t just going to ‘get better’ so I may as well share my experience with people who might actually ‘get’ it.

I was walking with a friend today and she commented (after Marley expertly avoided coming within 5 feet of a storm drain), “I feel like every day is an uphill battle for you….”
My reply?
“Nope. Some days are downhill– I see thing things are going to go to crap, and so I just go with it .”

Lately, our rollercoaster has just been in the most frustrating bb
_____________________________________________________________

And that’s where I fell asleep.
Almost a month ago.
I’m fairly sure I erased the 3 lines of ‘b’s that followed those two.. but you get the gist.

I can make excuses…. I can talk about how I’m usually on line from my phone and how hard it is to actually ‘write’ on that tiny screen… I can talk about all our new pets (a hedgehog!? another dog!?) and how ‘busy’ I am… but really, what keeps me away?

What makes it so hard to come back here and write?

This is what I wanted, isn’t it?

I wanted ‘answers’. I wanted ‘a diagnosis’. I wanted someone to look me in the eye and say ‘you’re not crazy’.

So why isn’t this any easier? Why can’t I just come here and spill words into entries 3 at a time and let them autopublish for the week?

I could say it’s because I’m busy ‘being a mom’– too busy to write about it… but then, my Facebook  holds me accountable and tells a different story (though it IS easy to post little blurbs from my phone).

Honestly, I don’t know why it’s so hard.

Yes, we’ve had a lot going on– who doesn’t? After Christmas we have less than 4 weeks before the birthdays start coming. Killian on 1/23, Chloe on 1/30, me on 2/10 (not that there’s an event for that, lol!), and suddenly it’s the end of February and I wonder where the first two months of the year went.

I’m still holding that long sought after paperwork that I needed to get Marley some services through the school district, however, we don’t know if we’ll even be in this school district much longer. My theory there is ‘why fight now only to fight again’? I know that I’m in for a lifetime of ‘fight’… but the process.. the red tape.. the transition for Marley… it’s enough to keep me sitting where I am and doing what I can for her at home. I’m hoping to get her into a local church next week for half hour long music and movement sessions. They have an area I can keep Killian and I’ll be close if something goes odd with Marley. (Right now my biggest worry is that she’ll tell someone the new dog is a ‘crotch licker’ like she did in PetSmart a few days ago… It may be true, but that 3 year old doesn’t need to know….)

Oh, Marley…

The past few months have definitely been rough.

I’m still in that place where I ‘can’ tell people that she has Autism… but I seldom do… I just stammer and ‘blah blah sensory issues…..’ 😦 Way to raise awareness mom.

I still cringe when people use improper pronouns (he/him) to describe HER/SHE. I still hope she doesn’t hear.
I am still filled with preoccupation about what people think when we go out to eat and I gravel like a thief before the queen when I realize I grabbed ‘the wrong yogurt’ on my way out the door to avoid a meltdown because as of 20 minutes ago she ‘hates’ her (previously) favorite restaurant.   When they come over and tell me that Killian deserves ice cream because ‘he was so good!’… I want to be sick. On them. And punch them. In the face. Simultaneously.

But I don’t. Nor do I call them out on their passive aggressive judgement and explain to them that last time we were at this restaurant Marley was under the table howling for the hour we were here… so in comparison to that, today was ‘good’. TODAY, she’s only wearing clothes 2 sizes too big instead of clothes from the womens/junior’s section. TODAY, she brushed her teeth with banana/apple baby toothpaste that costs more than double what I spend on mine.. and the other kids’… combined… for half the amount. TODAY, she agreed to come to this restaurant that she suddenly hates… on ONE condition– that I bring the frickin’ yogurt. The chocolate whipped Yoplait yogurt. Would I prefer organic? Local? Sure. But she wanted me to bring the chocolate whipped kind. The kind that Ben went to the store the night before to buy and then placed in the fridge for me. And that, my friend, is the game changing moment. I didn’t put the yogurt away. I let Ben do it. The man is practically an engineer– he can handle buying and storing yogurt. Right? Of course he can. It would be unfair to cop out and blame him. He did what I needed. He got the yogurt. He put it on the top shelf. Job well done. Until I messed it all up. I didn’t look into the fridge as I balanced a 35lb toddler on one hip, keys in my mouth, and a diaper bag on my shoulder. I just grabbed. I just reached in and grabbed one of the 4 yogurts on the top shelf, tossed it in my bag, loaded up the car, and drove the 20 minutes to the restaurant where I plopped it down on the table, peeled back the top and in doing so, unleashed the horror of key lime. Oh yes– nothing like seeing lime green where there should be chocolate.  I saw it only slightly before she did and I started pleading– I’m sorry! So sorry! It’s my fault.. I should have looked…… I beg her to breathe.. to calm down… in hushed whispers as I feel their eyes burning into me.

::inhale:: ::exhale::
Wow. That day still stings… I feel like I’m in the hobbit phase now.. Is that a phase in the grief/acceptance process? It’s probably a cute word for denial… :/

Chloe is pulling away and finding it harder and harder to choose to relate to Marley and easier just to stay at/return to her dad’s house where things are ‘normal’. That kills me. It literally breaks my heart in two.

But I get it.

Wouldn’t I like a safe place? Somewhere that I could go and not worry about crossing the mindfield that has become Marley?

Of course I would– but that’s not reality for me. In some ways, I’m glad that Chloe has that escape… and in others… I am completely envious.

I hope to be more ‘present’ here. This is my ‘place’.

When she’s sleeping.. and Killian is sleeping.. and Chloe is gone… this is my escape. I’ve had many wonderful moms reach out to me in the short time I’ve been blogging.. and I see the support that these ‘mommy bloggers’give each other… I want that.
I NEED that.
WE need that.
Because some days, when I see it all going to crap… I need someone to roll with down this long mine covered hill.

My Bonnie lies…. on the couch.

Well, our visit to Baltimore went well. I mean, if you don’t count the labwork. Or the fact that it was a drizzly, foggy day. Aside from that, it didn’t suck. 🙂

We met with Dr. Deepa Menon at the Center for Autism and Related Disorders at Kennedy Krieger Research Institute. After talking to me and observing/talking with Marley, she seemed amused (in the ‘Uhm, yeah… right.’ kind of way) when I mentioned that one of the doctors at our last visit to KKI said that she felt Marley has Oppositional Defiance Disorder after seeing her for a very short time after a very difficult morning. So, we’re now 2 out of 3 and that definitely makes me feel less crazy. The lab work is testing to link the PTEN gene with macrocephaly and autism.

We received her clinical note in the mail this week and the diagnoses are:
-Autism
-Macrocephaly
-Anxiety
-Fine Motor Developmental Delay
-Expressive Language Disorder

My next step is to approach the school again, and hopefully with a dignosis from two clinicians and thorough notes/specific recommendations from them, the school will help us.

So.. that was our trip… I mean, there was also getting lost in the ghetto, the fight to get Marley to let us draw her blood, getting lost in the ghetto, and stopping for a Cinnabon on the way home only to find out they ran out earlier in the day….. but what’s really interesting is what happened before we left….

A week before we were supposed to leave, Ben went to buy our Lab, Lucas, some more food. He came home and called me into the kitchen. He whispered that he had found a dog that he wanted us to go meet. Now, we were not actually looking for a dog. He’s mentioned casually that he’d like to get a dog for Lucas to ‘train’ since he is over 10 years old and likely not much longer for the world, as he has overcome heartworms, strokes, & seizures in the 6 years since we rescued him from his second rehoming. I, personally, am a sucker for the ‘underdogs’ (lol!) and have brought home a string of strays on their last leg. When Killian was 3 months old, I brought home a puppy from the Walmart parking lot (I had Chloë with me, she’s an animal lover, and I’m a sucker). Unfortunately, after just less than a year with us, I had to rehome her as we realized that Killian was allergic to her and would break out in hives. Chloë was crushed, I was none to happy, but knew that it sure beat keeping her crated all day to keep her away from Killian. She was part shepherd, and as far as we can tell, that’s what Killian was so sensitive to– he had been around our Lab, his aunt’s Lab, and my best friend’s Lab/terrier mix.

Anyway– I told Ben that I would not be going– isn’t this the same man forbid me to bring home another pup after the last went!? I told him that taking Marley was not a good idea if he wasn’t sure, and that he could take Chloë instead. As I shuffled them out the door, I told him to get the application if he thought she was a good fit and that I trusted him– he told me it was already filled out…. That’s when I knew that he was serious about this.

He and Chloë returned a while later and he told me that the shelter would let us know if we were approved by that Tuesday (this was Saturday) and that if we were, we could pick her up in a week after she was spayed.

Well, I took Marley and Killian to the shelter twice that week and I fell in love with this pup Ben had named ‘Bonnie’. She took to the kids, and I was heartbroken to find out she had been there 6 weeks already. Her owners had been notified but they never came to get her. She was found dragging a chain and there was a circle of bare dirt around her dog house where she had been chained. We were approved that Monday.

I could go on and on about how she is such an amazing fit for us all. About how great she has been for Marley. About how you’d never know she was an outdoors pup. About how she looks and acts exactly like my dog, Raven, that I grew up with. I could rave that she goes to her ‘room’ (crate) on command, but how she rarely has to since she doesn’t much care about getting into our food if we’re eating in there. But really… what matters the most, is this…

 

mo&bonnie

Cuddlebugs

 

 

She's fast!

I'm not sure who had more fun, Mo or the pups...

 

Love.

New meaning to 'puppy pile'! Bonnie asleep on Killian who is asleep on me!

 

Spoiled much?

 

Like AOL dial-up… I’m ‘still processing’…

I realized yesterday that twice now since Marley has been formally diagnosed, I’ve explained her behavior with a quick “she has sensory issues”.

SERIOUSLY!? I can’t win for losing here.

I felt bad when I would stammer “She has Autism…” before we had a formal diagnosis. It only happened twice and one of those times it was to help explain why she was acting like I kidnapped her.

Now I’m beating myself up for not just saying “She has Autism” when trying to explain why we needed to visit a pup outside of the kennel at the animal shelter due to the noise.

Why? Why not just say it? On the flipside, why say it? She’s always been the kid that makes me say, “Oh, Marley!” and has been a bit different. That hasn’t changed with a diagnosis.  She’s still the same quirky, entertaining Marley that we love.

Mo at 22months

 

Mo (now) at 3.5yrs.

 

Growing up, one of my best friends had Cerebral Palsy. I volunteered with Special Olympics as she competed and enjoyed every minute of it. In high school, I took a class that placed me in an aide type position in the middle school’s Special Education class. As an adult, I worked for two years as a personal assistant to a young boy with Cerebral Palsy. I bathed, changed, tube fed, and read to him. I took walks with him, pushing his chair and talking to him about what we saw. I practically lived there– even staying with him solo for a week while his mom was out of town on a much deserved vacation.

Somehow, despite all of those experiences, I maintained this attitude of “Oh, I can do this, but I could never PARENT a special needs child.”. I even planned to go to college to become a Special Ed teacher, knowing it would mean 8+ hours a day in a classroom with many children with various levels of assistance necessary. Whenever anyone would comment about my job, my friend, or my volunteerism, I would always parrot “It’s not anything special I’m doing– the parents, though, I just am not THAT strong”.

Yet here I am.

Still not feeling ‘worthy’ to claim the title I’ve held in such high regard my whole life. I mean, it’s not really a title that people dream of. It’s not something anyone aspires to. Honestly, the hardest work comes after, not before. You can’t study for it. You can’t prepare for it.  It’s like a game of ‘crack the whip’ gone awry. Except it’s not a game. I don’t know that you ever feel like you’re “doing it right”.

Parenting... you're doing it wrong

Since we got back from Baltimore… and as we prepare to go again… I’m finding that I’m ‘still processing’ all of this. I haven’t found my groove just yet. Maybe it’s because as much as I “knew” and thought I was prepared, I got blindsided by how quickly this has all happened. Not only did I/we put off her behavior for quite some time, thinking we could modify it with time outs & such, but I was prepared for months of waiting and an uphill battle for a diagnosis.

Honestly, not only am I still processing having a name for all those behaviors, but I’m working on something much deeper within myself… I’m working on reaching out. I’m working on asking for help. I’m working on speaking up. I’m working on seeing a blessing as it lands in my lap and instead of saying “Why me!? Why us!?” saying “Why *not* me!? Why *not* us!?”.

 

Baltimore bound… again!

Living 3-5 hours from Baltimore, you’d think that I would have been there many times in my 28 years– they have an amazing aquarium and the inner harbor has shopping, museums, and quite a few activities for families. My first trip to Baltimore, however, was in 2009. I was a few months pregnant with Killian and Ben, his dad and I took the girls for a day trip. We went to the aquarium, rode on the dragon boats, and visited the Maryland Science Center.

The girls looking out of the aquarium into the harbor.

This year, I’ve been twice.

First in April when I took the kids on a road trip to Vermont. We stopped for an overnight in Baltimore on the way back after stopping in New Jersey to visit Carlo’s Bakery (Cake Boss). Before heading home the next morning, we went to the Inner Harbor and visited the American Visionary Art Museum (this is a must see if you have kiddos!).

At the American Visionary Art Museum

Then last week when Marley, Killian, and I went to Kennedy Krieger to meet Dr. Tierney (&Alli!) to get Marley diagnosed. I didn’t get many pics (other than in the hotel room), but it was still an interesting trip even though we weren’t able to visit the Inner Harbor again. I did find it interesting though, that the cake I made that weekend for a friend’s son was a Baltimore Orioles Baseball cap! It brought back great memories from elementary school– Johnny Oates was my substitute gym teacher and on his last day, he brought us each a signed photo card. I realized that I still had it tucked away, and as much as Baltimore is beginning to be a part of our life, baseball isn’t… so I gifted it to the birthday boy with his cake. I’m not sure who was more excited– him or his dad!

 

 

 

I found out yesterday that we are scheduled for our third trip this year. As I was working to finish yesterday’s post, I received a call from Dr. Deepa Menon. We are scheduled to meet her on 11/21/11. I have decided to leave Killian home with Ben while Marley and I make the trip. It was a tough decision, but Killian has been doing much better lately (allowing Ben to put him to sleep and comfort him, etc.).

I’ve been looking back through Marley’s medical records, cursing myself for being such a ‘relaxed’ mom when it came to milestones– I’m still like that, of course, but I see the value in documenting them now even if you don’t keep track of if the kiddo is ‘early’/’on time’/’late’. I’ve been looking through her seizure videos and will likely end up posting them in an entry soon just to have them all in one place.

I honestly do not know what I have done to reap such blessings as I have lately– the doctors we are meeting and the evaluations we are having done are typically not without a considerable wait and great cost.

Ten days away from more answers….

“Well at least you know…” Part 2

“When can I get my blood shot?”

“Is it time for my blood shot yet?”

“Can we get my blood shot now?!”

Never in my life would I imagine that I would have a child who was so intent on having labwork done. I had been honest and upfront with Marley about what to expect at our evaluation appointment. I let her know that the doctor would be checking her blood for cholesterol. She needed to know exactly how that would happen, so I showed her some phlebotomy diagrams and instructional videos on YouTube. She was able to see the vacutainer, butterfly needle, cleaning procedure, etc. shown step by step. It seemed to calm her fear that the tech would hit her bone.

For days before we left she would ask if it was time for her ‘blood shot’ yet. Done with hearing “soon” or “tomorrow”, on the way to Fredericksburg to stop for dinner she asked if we were getting the ‘blood shot’ that night when we arrived in Baltimore. In an attempt to avoid a meltdown over this (again), I told her that it was really late but that I would call the hospital when we left and see if they were still open.

Yes, I lied to her. I had tried unsuccessfully to explain it to her, and I’d like to think that overall I do a pretty good job of keeping her in the loop and answering any questions she throws at me. At this point, though, I was exhausted and no matter how many times I told her when the blood draw would happen she is not the best with timelines.

As we got down the road, she would ask once more. I told her that I would call, but that it was late so they may be closed. She then surprised me. “If they are closed, do we get to go to the hotel first?”, she asked. I told her yes, and asked if that is what she wanted to do. She said yes, that she wanted to get to the hotel, but that I should still call the hospital first. I breathed a sigh of relief– it’s so much easier when she’s on board!

From the moment she woke up the next morning, she was again fixated on the blood draw. She kept repeating her phrases over and over, despite being told ‘later’ or ‘soon’ or just plain being tuned out as the first doctor spoke with me. When it was finally time to go to the lab, Alli walked us down. Marley was excited to take a ‘secret tunnel’ Alli showed us which was painted in an underwater themed mural. She ran slightly ahead and pointed out animals along the way.

Once in the lab area, Marley and Killian played for a bit before it was time for Marley to go in. She jumped right up on the stool and thrust her arm out. The tech was surprised and suggested that Mo sit on my lap to be a bit more comfortable. When the latex band went on, she was not impressed. Knowing that ‘tight’ frustrates her, I had prepared her for the fact that this would be tight on her arm but that it is not on for long. In retrospect, maybe I should have tried to show her by a quick visit to our pediatrician’s office for a ‘this is how the band will feel’ rehearsal. (Yes, Dr. Young is just that awesome!) Eh, hind sight & all that jazz… Anyway, she was not a fan of the band, which lowered her tolerance just enough for the needle to bring on the tears and complaints. She kept her arm perfectly still despite wanting to be finished. She didn’t move a muscle or attempt to pull away. We are all shocked at how well she did. After the blood draw was over, the tech wrapped Mo’s elbow in gauze tape. (That stretchy bandage material that sticks to itself.) Well, to get it to stick, you have to stretch it a bit– you know, tight. Pink and purple hearts be darned– Marley wanted this thing OFF. Alli and I both offered to take it off for her which would have been fine except for the fact that she was convinced that she was going to bleed out/fall off (or something) and wouldn’t let us near it.

I still had a good bit of paperwork to do and Marley was given a boxed lunch to eat. We sat in an exam room in the lab area and a few moments later Marley declared that she needed to pee. Since I was eyeball deep in paperwork, Alli asked Marley if she could walk her to the restroom. Marley was fine with that and let us know that she would need help with her pants with a worried “But my arm is BROKEN!!”. 😉 I nodded to Alli that it was ok, and the potty trip was uneventful. After a bit longer, Marley was done with what she could eat of the lunch (lettuce from the sandwich, pretzels, a cookie or two, and a Sprite), the room was beginning to get stuffy, and Killian was not happy to be in the stroller. Alli suggested that we could go back to their office building and set up in a room that was larger for me to finish while the kids could be less confined. That was perfect, and we headed over.

I worked my way through the pages of questions. At one point there was a sheet that listed symptoms/disorders and with check boxes under the headings of “Mother”/”Mother’s Mother”/”Mother’s Father”/”Father”/”Father’s Mother”/”Father’s Father”. Without going into too much detail, I think this would be an excellent checklist for at risk teens who want to get pregnant– it was enough to make ME reconsider having kids… and mine are already here! 🙂 Items like “has had trouble with the law”, “suicidal”, “depression”, etc. are listed and I must say, it makes you think about what you’re throwing into the gene pool!

It wasn’t long before Dr. Tierney came in. By this time, Killian was tired and so he was on my lap nursing. She offered to give us time to finish and I cracked my typical “You’ve got boobs/I’ve got boobs” reply and she assured me that she didn’t mind a bit, so we got down to business.

I have since realized that these questionnaire’s are not only about how I answer the questions, but also how they are expanded upon for me. When the first doctor had asked me about Marley making up words, I said yes, but drew a blank– only thinking about the (many) nonsensical words she comes up with that have no basis in reality or phonetics (which means I don’t commit them to memory since she will only inform me that I’m saying them wrong anyway). When Dr. Tierney asked, she followed with “such as creating other words for  things…”– THIS was what I needed. “Yep! ‘Zombie garden’ for cemetery, ‘squirrel peanut’ for acorn, she does that for a lot of things!”

As we went through the many questions, she was patient and understanding when I couldn’t answer a straight “Yes” or “No”; I realized that I prompt Marley often (as I do with all the kids in an effort to teach manners and proper socialization) such as prompting for “Hello”/”Goodbye”/”Please”/”Thank you”/etc. This is all well and good until you have to recall the last time your child said this or gave a gesture (for hello/goodbye) of their own accord or in response to someone without a push. Questions like “Does Marley show you things?” “Does she point?” were hard for me to answer. Yes, Marley asks me to come see a drawing or brings it to me, but in the car or on a walk she’ll simply say, “I saw a cow/dog/airplane.” in more of a informative way than a ‘I’d like you to see, too’ way.

Thankfully, Dr. Tierney is much better at this than I am. After an hour or two of questions, observing and talking to Marley, she looked at me and said (and I won’t even claim this is verbatim; I think there was a preceding phrase affirming that I wasn’t nuts, and if not, it came just after)…

Marley has Autism. She’s a tough one– she can make eye contact and has an interest in being social even if it isn’t working, but she does have Autism.

At this point, I cried. I think this particular flow was tears of relief. Especially as earlier that very day, I had felt that my moments of denial and questioning myself seemed to gain the upper hand as a doctor told me that she “didn’t see ASD”. To have been so close to going home with that… and now I’m being told that I’m right. I’m not crazy. I am in tune to my child and no, this behavior isn’t typical.

She mentioned that since Marley didn’t qualify for her study, she would bring me information on another. A developmental pediatrician named Dr. Deepa Menon is doing a study on macrocephaly and Autism. I never thought that Marley having a head in the 98th percentile would be a good thing, but it seems that for now it is. (It also explains her disdain and sensitivity to ‘tight clothes’– neck holes are her #1 trigger in clothing fit.) Dr. Tierney also mentioned something that I’ve told our pediatrician and a few close people without me saying anything to her first– it’s almost too coincidental that Marley had the Myoclonic Seizures as a baby and now has another neurological issue.  I hope to speak to Dr. Menon about a possible link as well; it’s nice not to feel like a conspiracy theorist.  She then took us into her office and wrote up a letter for the school system. Since I had so much trouble with my GPS on the way in, she asked Alli to get me directions for the way home and even highlighted a map for me. She told me to take some time to process this and then send her an email or call with any questions. I thanked her and joked that I had already decided to limit myself to sending Alli one email each week with all my questions from the days prior so I don’t flood them. We said our goodbyes and were on our way.

The trip home nice, the kids both slept the entire time. I called Ben and briefly explained things to him. I sent a text to our pediatrician to give her an update as well. Traffic was typical, but decent for rush hour in DC. I woke Marley & Killian up a little over an hour from home to stop for dinner/snacks and to get a Cinnabon. I didn’t expect the Cinnabon signs to lead me to a truckstop, but they did. It was a huge one and quite the adventure for the kids (ok, and me, too!).

Chloë and Ben were glad to have us back and the littles were glad to see them both.

I will say, I was blindsided by how right Dr. Tierney was. When she said to take time to process this, I didn’t ‘get’ it. Like the soda for the road that Mandi ordered me at Sammy T’s, I didn’t think I’d need it.

I was wrong.

 

 

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